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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
August 6, 2024
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Answer Summary

Members openly shared their experiences with complementary and herbal treatments alongside conventional MPN therapies, with many emphasizing... Read more

Members openly shared their experiences with complementary and herbal treatments alongside conventional MPN therapies, with many emphasizing the importance of working closely with healthcare providers to avoid interactions or risks, particularly with blood thinners and kidney function. Several members described using supplements like turmeric, berberine, medicinal mushrooms, fish oil, cannabis oil, and vitamins for managing symptoms, reducing inflammation, and supporting overall health, while others raised valid concerns about inconsistent dosing, lack of regulation, and potential liver or kidney damage from unverified herbal products. A recurring theme was the balance between seeking personal control over illness and placing trust in science, with members encouraging each other to thoroughly research options, consult integrative or functional medicine doctors, and share what works while staying cautious about unproven claims.

A myMPNteam Member

I use a combination of complementary health supplements as well as using Besremi to treat the PV. My list includes:

Anti-inflammatory - Turmeric/Curcumin, L-Glutathione, SPM Active
Liver protection/manage LFT elevation from Besremi - Milk Thistle Extract
Immune system boost/manage leukopenia from Besremi - Reishi, Astragalus
Nutritional deficiencies - Vit D, Magnesium, Vit B/folate

All of the above is done in consultation with my Integrative Medicine doctor and the rest of my care team.

August 6, 2024
A myMPNteam Member

Hi Deepak - while not discounting unyet discovered herbal influences on MPNs, in the words of Tim Minchin "if alternative medicine worked it would be called medicine". That's not to say that things cannot help but you should discuss with your physician before jumping in too far. For example, many anti-inflammetory supplements like turmeric etc, can lead to increased risk of bleeding for people on anticoagulents and aspirin. I tend to look toward a mediterranean diet to reduce the impact of the MPN (I have PMF) and am controlling other things with exercise, healthy lifestyle, and no alcohol. As for any supplements having a curative effect - I am placing my faith in science. Having said all that, every journey is different and this is a relatively new field. So if you find something that work for you , please share.

September 25, 2024
A myMPNteam Member

I also struggle with insomnia. Sometimes, I resort to herbal medicine made in Vietnam to help me sleep better. However, I often only manage to get about 3 hours of sleep each night. I want to share my experience with you and express my understanding of how challenging insomnia can be.

February 14, 2025
A myMPNteam Member

Hi Depak. Yes, I take medicinal Mushroom powders, Berberine which helps Jak inhibitors work better and Cannabis oil. I saw an MPN specialist in Irvine and she thought the same thing BC was taking about, that for some reason., even though I said they were only a quality of life thing. Next thing I know she’s nattering on about mushrooms being curative to get a chuckle out of an audience full of doctors.
On the contrary, I’m doing so well, my Drs at MD Anderson don’t even want to hear from me. I’ll be happy to elaborate if you have any interest.

September 25, 2024
A myMPNteam Member

Deepak, are you in Delhi near Turlock? Who is your MPN specialist? I am also looking for EVERYTHING natural to manage this MPN and be healthy! My husband is a Functional Medicine Practitioner in Turlock but this condition is out of his wheelhouse (for now), he is researching and looking for other options.

October 2, 2024

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